Hi everyone, I was so grateful to see you all still here. After 25 years of a ME/CFS diagnosis. A hospital endo has just picked up that I have very low T3 just scrapping in at the bottom and a high T4 over-range. I have always felt dreadful on levothyroxine and my final raise of 100 mcg was 4 years ago. He said I am pooling and not converting T4 to T3.
Years ago I went on natural thyroid medicine but I could not carry on I was so ill on it with hyper symptoms and had to go back on levothyroxine. My adrenals are shot. I do have a left benign adenoma on my adrenal.
He has decided to start me on 10mcg of T3 and reducing my T4 by half to 50mcg. I take T4 at night and T3 in the morning, for 6 weeks and then a blood test? Everywhere I read you should be going up slowly every 2 weeks. What do you all feel?
Funny how this is mirroring. I also had B12 not absorbing and just pooling in blood. I have enlarged red blood cells. I self inject and follow the B12.org protocol. It has been pretty good for me.
I am hoping Shaws is still about on here, Seaside Suzie and Clutter. <3
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Katherine123
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It's OK to start on 10 mcg LT3 although I would take half in the morning and half at bedtime. I find the bedtime dose more useful, it gives me deeper and more restorative sleep.
10 mcg LT3 is equivalent to 30 mcg LT4 so your overall dose is being reduced somewhat. This is fine in the short term as the LT4 will take longer to clear out than the LT3 accumulates in your blood due to the different half-lives. You can then review it in six week's time.
Hi Jim, thank you for coming in and answering my post. I was feeling so much better up to 2 days ago. The year of gallbladder pain and cholecystitis (2 gallstones and gallstone sludge) went over night! Before that I was in daily pain especially when eating. I am severely underweight. Now I feel back to before I started T3. I have been on it 10 days.
I need my gallbladder Jim. It is a major part of my digestion. It is really weird how taking T3 has got rid of the pain. The thyroid has a strong affinity with the gallbladder. Science says that any one who has gallbladder disease should be checked for hypothyroid. Thyroid UK are on this too.
The stasis caused by hypothyroidism can cause gallstones and gallbladder disease, it did in my case. The gallbladder releases bile when fat enters the gut but nowadays we tend not to eat very high fat diets and we are not very short of food.I had my gallbladder removed the only thing I missed was very considerable pain. The other factor to consider is that a diseased gallbladder has little or no function. The longer it remains in place there is the risks of pain, adhesions and pancreatitis caused by stones stuck in the biliary tract which is extremely painful. It's up to you but I would have it removed.
I have it as an option Jim. I have had family members who now wished they did not have it removed. They are still in pain and lots of digestion issues. If it is no man's land I will get it removed.
It's very important to confirm digestive problems are due to cholecystitis and not other causes such as IBS. if I remember correctly about half the population eventually get gallstones so in most cases they do not cause problems. Vague 'digestive' problems are usually not due to gallstones. Your description of a year of gallbladder pain suggests you have a clear diagnosis. This is best done by seeing massive bilirubin levels in the blood after a gallbladder attack. If you have gallbladder pain you will know about it, it will range from a sharp pain on passing a stone to very considerable pain over several hours.
Removing a gallbladder is a very successful operation but too often the gallbladder is blamed because stones show up on a scan when the cause is something else. This is especially true in the USA where they have twice as many operations as the UK which is not explained purely by diet or ethnicity. It's important to get the diagnosis right. If you continue to be without these symptoms then either there was some other gut problem resolved by LT3 or perhaps your gallbladder has packed in and no longer causing problems. I guess the best option is to wait and see. If your pain resumes it would be worthwhile getting your GP to do a liver function test as soon as possible after you get the pain - assuming this hasn't been done already.
Note I'm a patient who had these problems many years ago and researched it, I'm not medically qualified.
Hi Jim, I have an appointment in October with NHS consultant and hopefully they do another scan and MRI. At least I will be able to see where I am in the gallbladder front. I have been waiting a year for this appointment. The pains that took me to A&E were worse then labour pains. I did have one episode of pancreatitis although my pancreas showed up as ok on MRI but this was before the pancreatitis. I had an extended 10 mm bile duct would should have been 3 or 4 mm. I am guessing I passed a huge stone. I have gallbladder wall thickness too. I have 2 small ones, unfortunately is one stuck near the entry of the gallbladder. I have lots of gallbladder sludge. I have been throwing the kitchen sink at this for a year now, so I do need some exploratory checks.
I know that if things get worse that I will need to have my gallbladder out. I just found it so weird that T3 stopped all the daily pain.
That is a little strange as levothyroxine hormone kicked off my gallbladder pain. I was very hypothyroid and I think my gut was asleep and woken up by hormone. Ser what the specialist says, removing my gallbladder was very successful. As I said earlier getting the diagnosis right is the important factor.
This is so interesting about hypothyroidism and gallstones! I had no idea about this. I’ve only been diagnosed as hypo this year, but had gallstones that caused lots of pain and had it removed when I was in my thirties. I’m now 54. Makes me wonder if I’ve been hypo for quite a while.
Hello Jim 111 I wonder if you have any knowledge about if you have a liver problem and they want to take my gallbladder out, but I’ve read having the gallbladder out can make the liver problem worse,hope you don’t mind me asking your thoughts thankyou
I don't have any knowledge of this, sorry. The liver drains into the gallbladder and then into the duodenum. I don't see how it could affect the liver but perhaps they mean gut problems caused by the liver.
Is your hypothyroidism autoimmune? Usually diagnosed by high thyroid antibodies
Which brand of levothyroxine is your 100mcg
Which brand is 50mcg
What was Ft4 and Ft3 results on 100mcg
That’s a large drop in levothyroxine…..quite likely too low….you may need to increase back a little after next test
Are you vegetarian or vegan
Or on gluten free or dairy free diet
Personally I would start on 2.5mcg and add 2nd 2.5mcg dose mid to late afternoon
If that’s ok…..after a week slowly increase ….initially morning dose to 5mcg …..than few days later increase 2nd dose to 5mcg
Retest 6-8 weeks after get on 10mcg T3 per day
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Hello SlowDragon, nice to see an old name on here. I hope you are well. Vitamin D was top of the range, so I stopped supplementing 10,000 iu's a day and have just been sitting in the sun for short periods over summer. I will get it retested Oct/Nov time.
Folate went very low just scrapping in. Off course, my doctor was saying this is fine. But I knew it was not fine. I suspect it was due to my self injecting every other day B12 injections (re: Dr Chandy). I am now on 5000mcg a day. Labs would not check again as I had a test 3 months prior.
Ferritin high over range, high iron saturation over range too. I do not supplement. I don't eat any fortified white flour products that have iron filings in them. I am not entirely gluten free, I eat Italian and French non fortified flour products. Not vegan or vegetarian but I have no appetite and have a strange meat aversion at the moment. I know I am very low on protein and have awful muscle atrophy. I am bed/couch bound. I cannot get enough calories in at the moment, which is not helping. Although T3 has stopped all the tummy pains and gallbladder pains. So I now might be able to do better on this.
I have been 12 days on 10mcg of T3 SlowDragon, once a day about 9 to 10 am in the morning. The endo said my T3 was 3.1 and had not move one bit from previous tests going back 6 years ago. I did think that cutting my T4 down to half was a bit steep, rather then say 25 mcg. I take that before bed. They gave me a T4 medication on this hospital prescription that I was not use to so I have been cutting my old 100 mcg T4 in half. My T3 medication is Liothyronine sodium hard capsules. Brand name Roma.
I have a 9am blood test 18/10/23. 6 weeks after I started T3. Endo said NHS does not like prescribing T3 now due to costs. So I am a little concerned he will stop my dose or not up it. I do have some Uni-Pharma T3 here, 25 mcg, 30 tablets which I got years ago. I was too scared to take them. They are now out of date 5/22 I think I sourced them from Greece after advice on here. I will also make another post asking me to message me with T3 suppliers so I can order some more. In case NHS decides to not prescribe them.
I am not to worried about the once a day T3 dosing as it has been working for me. Shaws are believe and others do a one a day. I just thought it was a little strange dosing from Endo as I thought you had to raise slowly every 2/3 weeks.
My hypothyroid is not Hashimoto's.
I have a left adrenal adenoma 12mm (benign) and one on the left kidney 8mm. This went down when I was very ill 7 years ago. I was have terrible pain in left kidney area. They only found it a year ago after a MRI. It does give me pain. I have not had any in depth testing on this. Still waiting for NHS.
I cannot get over any illness SlowDragon takes me months. Where by someone else would take 1/2 weeks. I was hospitalised with 7 weeks of tonsillitis and 5 weeks on strep B back in February 2023. I was so dehydrated because of the pain of swallowing and had to be on bags and bags on fluid. 4 lots of strong antibiotics later (I was antibiotic free, as far as one can be for the last 6 years) antibiotics make me badly sick. I am sure it took all my tummy microbiome down. My meat is from an organic farm, no antibiotic use, steroids or any other nasties, all grass fed and raised.
I cannot get them to do anything about my low cortisol. Although morning cortisol is now 340 which is a lot different from 118, 6 years ago. Although NICE guidelines say anything under 400 should have full testing and STIMS testing, NHS is not playing ball
The weird thing was when I was so sick in Feb 2023 my cortisol went up to 550 and I could walk and have energy. So I know my adrenals are trying to do what they are suppose to raising when ones is sick. So I do not think I have Addisons just very low adrenal output probably from 25 years of T4 medication only.
It sounds like you have been through hell! T3 is no where near as expensive as it was a few years ago. Don't let tgem use that as an excuse. I found your comment about your adrenal function possibly being the result of long term.T4 mono use interesting. I think 20years on T4 mono, never feeling any better on it, only worse, with gradual increasingly worsening symptoms of fibro, fatigue and migraine, to name the worst, affected my adrenal function.
I saw Dr P. his simplified explanation was the adrenals being compromised from.years of trying to compensate for poor thyroid function.
He also said if I didnt get the adrenals back working the thyroid wouldn't.
Of course there is no such thing as adrenal fatigue, as most endo's would say! They have clearly never experienced it. I have been taking adrenal suppliments for some years now and know I need them. I suspect. from.my own experience, that when stress happens our adrenals may respond but then, because our levels are generally low to start, the level drops too low after and we do not have the natural adrenal power to recover at any speed. For Drs to say, effectively, there is nothing between Cushings and Addisons is, imo, very short sighted.
It can take a lit of time to find the right balance of meds you need. I had to stop and restart several times, working with Dr P and with my gp overseeing,over c18 mths. My Gp saw the difference in me. I now take 60mcg T3 per day. No T4.
Every time I stopped T4, many symptoms dissapeared within days. I tried several times to reintroduce T4, within days the symptoms returned. Im my case I think T4 did me more harm than good. No one was ever interested in why t4 didn't work for me. I just know that 13yrs on t3 mono does.
I tend to store B12, have intermittent low iron and such too. A juggling act!
Hi Ursa, we sound so twinned. I am having an awful fight getting my endo to take my low morning cortisol seriously. At least he has now prescribed me T3 10 mcg once in morning. He wanted my T4 cut to half. I was on 100mcg of levothyroxine. I have been doing this the last 8 days. Although I might rethink the suggestion on here and maybe just cut it by 25mcg.
Ursa I have Thornes adrenal cortex here, it has helped me in the past. I also have pregnalone (spelling) and dhea re: Dr Sarah Myhill instructions on her website. I did not know whether to take these until my 6 week blood test. I self inject B12. That has been a big game changer for me. I also take B's, C, zinc, copper, vit E, selenium and L-Tyrosine, magnesium, potassium, minerals, extra B5, B2 and B1, and amino acids. I bloody rattle!
I am so severely under weight, the weight has fell off me. At least my non alcholic fatty liver disappered. Although I still have raised liver enzymes. I was in daily gallbladder pain, pain when eating and bloating, GONE! Since starting T3. Although my left adrenal or kidney is slightly hurting non stop the last 4 days. I have a benign adenoma on my left adrenal 12mm and one inside my kidney 8mm. Not sure if the T3 has made this hurt.
I was having to contend with no appetite and an awful metallic taste on my tongue. This has been ongoing. I can feel some small hunger pains coming back in the morning which must be a good sign.
Sorry SlowDragon, I forgot to answer the T4 blood range is 28. Apparently the ranges go up to 22. I have been over range on T4 for years. They was saying I am over medicated which I know I am not.
Going unaccountably off meat rang bells for me. After ten years on Levothyroxine that happened to me. I went veggie for many years because it was clear my body didn't want it. Over the coming years I went downhill gradually and couldn't think what was wrong. Eventually I found Healthunlocked and everything fell into place. I had appointments with Dr P and needed to go on T3 only and sort my adrenals out. Now 12 years on I take 60 mcg T3 a day and, having been on the Zoe Personal Nutrition Programme since January, I am fine. I believe going off meat happened because it is a little difficult to digest and my body was telling me to simplify my diet so it could cope with digestion. After I had been on T3 for a while my health began slowly improving and, as it did, I started fancying and eating meat again probably because my wise old body was telling me it could cope with digesting it again.
mstp I have never been a huge meat eater. The last 10 months I have had such a meat aversion. Also have a weird metallic taste on tongue. I have lost so much weight and have severe muscle atrophy. I am very low in protein. I am well aware that meat, protein and amino acids heal. Also I won;t be absorbing my good fats. I have been 10 days on T3 hopefully this will turn around over the months. I do feel a teeny tiny tad stronger. Going to google Zoe programme. I do eat very healthy organic wholefoods. I am now taking HCL and digestive enzymes. I had so much pain in my tummy when trying to eat. Pain, bloating and gallbladder pain gone since been on T3.
Hi Katherine123, I am still around, thankfully, and it is due to being on T3 alone and the newer GP in the surgery (last year) adjusted my dose of T3 up slightly.
I'm glad things are now going smoothly for you.
My new GP is a very good doctor and knowledgeable about thyroid hormone conditions although I've not had reason to have a face-to-face consultation.
I still follow Dr John Lowe's advice re T3 and take my T3 when I awake with one glass of water and wait an hour before I eat. If having a blood test I don't take T3 until after the blood draw. I have had no problems with T3, following Dr John Lowe's advice.
I have a normal life and feel well with no unpleasant symptoms.
It's good that the cost of T3 has reduced and I hope it will enable other members to be prescribed T3. There are also a number of different manufacturers who make T3. So it might mean you may have to trial a few to source the one that restores your health.
Hi Shaws, lovely to see an old name. You helped me so much last time. Am I right in understanding that 10mcg of T3 is such a low dose and will have to be titrated up. I have another blood test 18th October. Hee had me cut my levo to half from 100mcg to 50mcg. I am taken T4 before bed which I have done for a long while now and T3 in morning with a glass of water. Have you heard of T3 stopping gallbladder cholecystitis pain before?
I will try and find Dr Lowe's protocol. Is it on here?
I have never heard of T3 stopping gallbladder cholecystitis pain before.. I've also never heard of it.
All I know is T3 restored my health and I feel well and have no unpkeasant symptoms.
All severe palpitations and pain disappeared and I could sleep. My T3 has also been advised by an Endocrinologist and my GP is also good. Some other GPs I told them they were wrong after they made a statement to me.
I think the majority of those who have a dysfunctional thyroid gland find it difficult to consult with a GP as many seem to know very little about how best to treat a patient who had hypo,
One of the GPs in my surgery told me rubbish and I told him he was wrong.
I would never take T4 again as it caused me to have awful symptoms I had not had before. The cardiologist couldn't find the reason for me to have awful palpitations during the night.
I think it was due to levothyrxine as I do not have palpitations when on T3. I now take 10mcg once daily and feel well with no awful symptoms.
It is really weird Shaws when I come off our levothyroxine (longest I lasted was 3 weeks off and then every joint in my body and feet hurt). For 3 weeks I felt great not on any levo until my tsh started to increase and the joint pains. I have always said to my doctor this drug is making me unwell. But she does admit she knows nothing about thyroid. I am still doing well on my 10mcg of T3, no gallbladder pain! I am back eating, I even feel hunger pains in the morning. Not felt them in about 15 years. Thyroid Uk does seem to know about the thyroid and gallbladder connection. I did a deep research dive and they are so connected. Low T3 can apparently cause Splinter of Oddi dysfunction so you are not realising bile when you should be.
Every day I can feel myself becoming stronger, my brain feels like it is back firing on all cylinders. Strangely my sleeps has got worse though and my muscles jumps and jerks before falling asleep are bad at present. Alas my adrenals are down, that is why I probably felt so ill on NDT when I tried it 5 years ago and had to go back on levo. I am hoping the endo will address my low morning cortisol of 340. I will keep you updated. I have another blood test 18/10/23.
I am on full replacement: liothyronine 10mcg and levothyroxine 100mcg, taken during the day. Separating my T3 into 2 doses is not necessary, in my case. This dose is consistent with the levo "full replacement dose" of ~1.7mcg/kg body weight, figuring in each microgram of T3 being worth 3 micrograms of T4.
One of my relatives who went onto natural desiccated thyroid, also had problems with it. NDT has too high a T3/T4 ratio for the human body. I find the 1/10 ratio I use, puts me at TSH~=0.6 which doesn't make me feel hyper, and is acceptable to most docs.
I do think I might have to go up on this dose Eddie. I am so grateful that the daily bad gallbladder pains and tummy pains when I eat have stopped. I even may be able to put some weight back on. I am actually getting hunger pains in the morning. My ataxia, which was like I was walking on a rocking boat appears to be a bit better. My numb feet and toes feel like they are coming back to life. I keep wiggling my toes on the sheets at night, it is weird I can feel the sheets. My tongue has stopped swelling up in my mouth. I feel a tad stronger, still very fatigued though and dreadfully unwell. I am hoping that my enlarged red blood cells (oxygen deprived) which I have had for 15 years might go back to normal. It will be an interesting blood test this time. I am also due a scan and MRI on my gallbladder. Not sure when I will get that as our NHS is so broken now.
Hi, my first three months on T3 has been same as you - 6 years on levo never feeling great - T 3 3.9 low end of normal range of 3.1 - finally got T3 so went from 100 mcg levo to 50 mcg levo and 10 mcg of T3 - blood test after 9 weeks and T3 now 5.00 but having trouble now in getting it on NHS
Hi Essexlil, I have been so grateful that an endo listened and queried my really low blood pressure of 52/79. He looked at my over range T4 result and instead of reducing which most said to do and I just got sicker. I was on a 100mcg levothyroxine. I have never ever felt well on this medication. I did try natural thyroid medication and got really sick on it. I now know my adrenals had nose dived. How do you feel on 10 mcg of T3 and 50 mcg's of levo Lil? Is your endo not going to increase your T3? From what I am reading 10mcg of T3 is a tiny dose and needs to gradually titrate up until you feel really normal well. How are your energy levels and fatigue?
I worry that I will have trouble getting T3 on the NHS.
I've been seeing an endocrinologist at Liverpool for my parathyroid problem ( primary hyperparathyroidism) she also did some thyroid function blood tests when I was there on Aug 8th this year,.. Firstly I only take T3 as I wasn't converting T4 to T3 well, my T3 was always low.
I'd taken my 10mg of T3 at 5am the day I traveled to see the endocrinologist, she rang me with my results on both my parathyroid and thyroid.. Parathyroid indicated primary hyperparathyroidism... But my T3 was 11.9...range.. 3.10...6.80)..i explained I'd taken my T3 10mg at 5am same day as test so that is why it's showing 11.9.
She went on to explain she would not have expected it to be 11.9, (5am T3 dose 10mg.....11.30 blood draw... That's 6 and a half hours after ingestion 🤔 and still my T3 was 11.9...then she asked "when would I be taking my next dose" .... I said at 12.30 10mg..(i split my T3 in to 3 doses 10mg,10mg,5mg..(25mg per day) she then said... So your T3 is 11.9 at 11.30..then at 12.30 your going to take another 10mg..she started talking about me pooling the t3 in my blood stream (quite frankly I'd never heard of this) I have colitis and are lactose intolerant,, I'm having bad gut problems with the t3 diarrhea cramps and inflammation , she went on to tell me about the drug being absorbed in the gut then going to where its needed, as I now take T3 I don't need the conversion T4 to T3.. But she thinks I'm either hypersensitive to the t3 or I'm pooling it.. It's not going to where it should and is pooling in the blood😮.
This is so confusing 😮 she as asked me to talk to my gp about getting my colitis sorted and about my T3, the pooling/hypersensitive.... 😂😂😂😂😂😂😂😂 Forgive me for the laughing emojis... But my gp is usless, it took the surgery over a year to Diagnose my graves disease, lost my thyroid in 2019 😠.. The actual gp appointment is about the parathyroid report by this endocrinologist in Liverpool, but I will try to explain what she said about my thyroid medication.. It's good knowing pooling as been mentioned to you also, I fear my gp will look at me like I'm mad... As he always dose🤷♀️
It's a weird thing... Pooling.. I'd never heard of it until this endo in Liverpool looked at my results 🤷♀️... I've struggled on both T4, T3, in all forms, this Roma is soupose to be lactose free but I'm fairly certain there are some fillers in it that are causing the gut/stomach issues, probably also effecting absorbtion issues to.. 🤷♀️
I am on Roma capsules 10mcg one in the morning Birkie. I had not heard on pooling in blood until my B12, pernicious anemia diagnosis. I am sure a lot of our hormones could do this and ruin our uptake of things.
I used to get T3 mess about with it a bit I'd say morning and afternoon early or mid afternoon, that's horrible all that. I have had thyroid since 2001 and CFSME since god knows when 2009 cud not get much balance back and my immune is wrecked. I eat healthily and rest a lot and read.
I was diagnosed with cfs, fibro, ME in 2005.. After full thyroidectomy in 2019 I've never really recoverd, I feel I'm in limbo with little to no help from my surgery, at least this endo in Liverpool has finally got me diagnosed with primary hyperparathyroidism, which I was diagnosed with in 2004 and left.. Watch n wait by the endo and gp.. I've gone on to be really ill over the coming years and it's all been put down to the cfs, fibro, ME.. When in fact I had graves, and primary hyperparathyroidism 😠🙄🙄 I could slap my gp... If I'd not get arrested.. 😂
I know there's nothing that helps us in the medical world, we are in the desert , my life's a Ness with body like a yo yo and honestly I got immune problems immune suppression T3 I can't get hold of and I no idea how to boost the immune system. It's awful graves and hyperparathyroidism is anything you can take for it ?
It is awful Birkie, they have done this to me and left me for 8 years with no quality of life. Housebound or at times bed and couch bound. I am lucky that I can work on zoom with my clients. I can only work 7 hours a week now This should not be happening to people
Yeah I am in the UK --- I had to give up any big ideas for career - but I do work a bit in gaps I do - my gosh my life is limited and its sad and its not quality for people to live in such struggle and containment and physical pain only through containment can i do anything - and then i have to rest or wash ----its awful my immune systemm is so weak its like HIV (better than AIDS) like bad HIV ( as i know a few men who have had HIV and they say ME seems worse!!!!) It is sad the amount we give and not gettign what we want out of things in return and its so much non changeable but I guess this is my only life - I wish that the NHS offered treatments that worked for my body like immune boosting or some immune thing but God knows whether anything works through the NHS - T4 doesnt really absorb Vit D and iron just try and take in vitamin but dint know if my can do anything with anything and T3 they just stopped both my NHS doctor endo was rubbish and my private environmental doctor did start needing more and more details and was panicking about giving me T3 Nicola her name was but she was pleasant . Best wishes and rest rest
Hi Katherine 123 I am still around and am in good health through taking T3 alone. I take 30mcg of T3 when I awake and wait an hour before I eat. I do not have any symptoms and I feel well.
Seaside is very unwell at present and is undergoing treatment. Clutter left sometime ago.
It is good that you've had an Endocrinologist advising you and I hope he is good and is able to restore your health.
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I have heard of so many people hypothyroid and gallbladder problems. 
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